Eoad Timeline

French

I know that it is a question when you begin this journey and I also know that each Alzheimer is different, but I just wanted to draw my partner journey in this disease that lasted 3.5 years from diagnosis to death. We learnt at the end that it was a frontal form.

2015-2017: first signs

May 2019: diagnosis, MMS=20

From mid 2019 to mid 2020, I would say stage 4

January 2020 MMS= 15

From mid 2020 to mid 2021 stage 5

January 2021 MMS= 10

From mid 2021 to mid 2022 stage 6

September 2021 MMS=6

July 2022 MMS=0

July 2022-October 2022 stage 7

Death 10/3/2022

I did a scheme, it was important for me to see this journey. I join it.

MaryG123

I’m sorry French.  It progressed so fast!  Thank you for sharing your experience.   This forum helps me, because knowing what may be around the next bend focuses me on enjoying what today might bring while preparing for the future.

Dio

French, so sorry to hear of your loss! My condolences. Thanks for creating your timeline and chart. I'm among those who have been wondering about the EOAD progression and journey. I do understand that each person is different and anything goes with this disease. They also say that early onset and LBD seem to progress faster, but some have experienced otherwise. I suppose for us caregivers, the best that we can do is to take it one day at a time and hope for the best, whatever that is.

JoseyWales

Thanks for starting this French. I think it might help those who are new to see how different timelines can be. I'm so sorry it went so fast for your partner, but also a bit jealous. We've been on this road a LONG time.

2009ish - First signs (DH noticed, not me)  Age 45.

2010 - 2016 - Visits to about 5 different neurologists, 2 neuropsychology tests/exams, 2 different psychiatrists. All say depression and anxiety, perhaps ADD.

2016 - Finally a neurologist said early onset dementia (age 51), but wouldn't put it in writing. But whatever she said got us enough of a diagnosis to qualify DH for Medicaid. 

June 2016 - DH quit working. Probably stage 4 heading into 5.

June 2019 - DH started requiring more supervision, rarely left alone.

August 2020 - First hired caregivers while I'm at work. Full time supervision required.

June 2021 - Behaviors beginning to go downhill fast. Beginnings of forgetting who I am, although he almost always knows that I'm someone familiar. He recognized almost no one else. The next 9 months were horrible with behaviors, no real help from medical professionals. 

March 2022 - Placement. He never asked to go home. He no longer knew what home was.

June-ish 2022 - No longer able to feed himself, in adult pull-ups, still walking/shuffling. No longer recognizes me at all. 

September 2022 - No longer walking. Head hangs and he can't lift it up. Can't feed himself. He will smile at me occasionally and will sometimes take my hand and kiss it. He has a great appetite, and will comment "yum" or "oh, that's good" when he has something he likes.

And we will continue on.  Early onset doesn't always go quickly. He's only 58 now.

Joydean

French so sorry for your loss but glad your partner is now released from this horrible disease. My prayers for you and your family.

Dio

JoseyWales wrote:

And we will continue on.  Early onset doesn't always go quickly. He's only 58 now.

Oh, Josey, this journey is so awful with him being so young. I'm so sorry you are going through this. I feel quite deflated at the moment because the more I long for a quick salvation, the farther the reach. My DH is 61.

French

I realize that I forgot to give his age on the timeline. Some of you know it. Diagnosis just before he was 50. Death just after 53.

Yes, it is very young. 

And Josey I can understand what you feel. I am relieved that he is delivered and also certainly for me. I am just 51 and 4.5 year was already very long to me, working and carrying for him. Even when he was in Tunisia or here in hospital, it was a lot of stress. I really wonder how you could manage this so long and I admire your courage because I perfectly know what you had to manage.

ImMaggieMae

French, I am so sorry for your loss. He was so young.

Jo C.

I just saw this, French.  It is still so hard to realize that he was so young with so much that happened.  It was interesting to see the time line you did with the different changes on the chart; it really moved fast after awhile.  I am truly so sorry for all that happened.

How are you doing now?   From going so hard and fast immersed with the care concerns and management to now not having that in your days any longer; it must be a big difference.

I hope you are doing well and that you are at peace knowing that you did everything possible for your dear Partner and stayed overseeing his needs right to the end of his life.  No one could have done better.

I send warm thoughts and best of wishes your way,

J.

CStrope

Thank you for this.  I am extremely visual, and this really connected with me.  DH had an MMSE of 20 when his dr. tried to get him to have an MRI, and he refused convincing me he just had a bad day and didn't concentrate on the questions.  2 years later when he was finally diagnosed, he was at a 17.  It has been 2 years since diagnosis, I tested him at home and would score him at approx. a 12 at best.

What did you mean by "mainly temporal issues"?

abc123

Dear French, I am so sorry about the loss of your partner. You were an amazing caregiver for him and an inspiration to so many of us here. I hope you will take the time for your heart to heal and take good care of yourself. 

Sincerely,

Susan

French

Cstrope, I am also visual and I prefer to communicate with schemes.

My partner was a so-called « fast decliner » above or equal to 5 points lost per year.

By temporal issues I mean that he was unable to know the date and also to have time orientation ( perhaps temporal is a « faux-ami » and I should have said time issues). He was unable to tell its age, the day… he couldn’t manage his appointments and was going 1 day before, or at 8:00 am when it was at 10:00. It was the first main difficulty. And he couldn’t understand a calendar anymore so that it was very difficult to manage.